World PI Week – 22-29 April

WORLD PI WEEK 22-29 April 

On the last week of April (22-29 April), people from around the world celebrate the World PI Week campaign, to raise awareness and understanding of primary immunodeficiency. Download our Primary Immunodeficiency_IDFA infographic.

What can you do?

YOUR STORY: IDFA are partnering with CIRCA to produce an Immunodeficiency Storybook. Whether you are a patient or carer, send us some photos and tell us your story or send a letter to your MP (IDFA WPIW 2018 template letter for MPs). Join the World PI Week 2019 “Putting primary immunodeficiency patients at the centre of their care”!

THE FOCUS: To assist in “Putting primary immunodeficiency patients at the centre of their care”, our goals are to bring about change in policy and healthcare practice to improve quality of life of patients and their families through the following:

  1. Diagnosis
    1. by introducing newborn screening for SCID  (the bubble boy disease)
    2. by addressing the NBA Criteria for immunoglobulin Use
  2. Access to treatments
    1. by making access to immunoglobulin available to all immune deficient patients who need it
    2. by addressing the NBA Criteria for immunoglobulin (Ig) Use and making access to Ig therapies available for those who need it most
    3. by making access to SCIg (subcutaneous immunoglobulin treatment) easier
  3. Access to care
    1. by making Primary Immune Deficiencies recognisable and accessible to government agencies
    2.  e.g. NDIS
    3.  e. g. Centrelink
    4. Looking at ways patients can be “linked” or “recognised” in the health system to enable faster access to allied healthcare services
  4.  Patient organisation resources:
    1. Seeking government funding for IDFA to continue to provide support, education, resources and advocacy to our members
    2.  Increasing grants, donations and fundraising to enable organisational growth to provide patient services

More information: www.worldpiweek.org or email info@worldpiweek.org

This April, IDFA seeks to raise money to continue the advocacy, resources and services we provide to our members. These include education, advocacy and support by providing conferences, patient meetings, PI resources, patient packs, healthcare professional packs and support services.

The 10 Warning signs is a simple diagnostic tool to seek medical advice:

10 Warning Signs Poster

1.  Eight or more ear infections within one year
2.  Two or more serious sinus infections within one year
3.  Two or more months on antibiotics with little effect
4.  Two or more pneumonias within one year
5.  Two or more deep seated infections such as sepsis, meningitis or cellulitis
6.  Recurrent deep skin or organ abscesses
7.  Persistent thrush in mouth or elsewhere on skin after age one
8.  Need for intravenous antibiotics to clear infections
9.  Failure of an infant to gain weight or grow normally
10. Family history of primary immunodeficiency

OUR VIDEOS

What can you do?

SIGN the SCID NEWBORN SCREENING PETITION here

ORDER the PI AWARENESS PIN here

DONATE TO IDFA: Donate now

VOLUNTEER TO DISTRIBUTE POSTERS info@idfa.org.au

VOLUNTEER TO SELL THE PIN ($10 tax deductible) info@idfa.org.au

HOLD A FUNDRAISING EVENT  Morning Tea, Black and White day? Gold coin day? info@idfa.org.au / call 1800 100 198

More WPIW information : Like World PI Week Facebook page  Follow World PI Week Twitter: @World PI Week

The IDFA encourage members to raise awareness by taking an IDFA Healthcare Professional Resource Packs to their GP, Immunologist, hospital or other healthcare professionals. The pack contains the The IDF Patient and Family Handbook – Australasian Edition. This publication is endorsed by the Australasian Society of Clinical Immunology and Allergy (ASCIA) with a foreword from Dr Melanie Wong, ASCIA Chair 2014-2016, and IDFA Medical Advisory Chair.ORDER the Handbook and World PI Week resource packs.

BUSINESS DETAILS: IDFA is a NFP organisation with DGR status. View our business details

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